In December 2014 I was fortunate enough to have my whole family come from Malawi to England to enjoy the birth of my son, Chester. 

They all came at different times. My sister, Yolie and her son Christopher arrived first, on 8-Dec. My aunt Jayne picked them up from the airport and when they got to the house I was surprised to see that Yolie’s legs were so swollen that she couldn’t walk.

She’s naturally skinny so it was very obvious. She said her legs had swollen up en route. We all thought it was just the weird air conditions in a flight. She has lupus and is therefore prone to her legs swelling up at times.

Aunt Jayne (a former nurse) said she’d come by the next day to take her to A&E just to check if everything was alright.

When they got to A&E the doctor that saw them said that the swelling in her legs would go down, it’s going to be fine and she should just go home. As far as he was concerned, it was just another migrant trying to use the British health system for free.

My aunt insisted that my sister had left home healthy and was now in this state so they should at least run some bloods. A more senior doctor agreed. Begrudgingly, the first doctor took bloods and told them to go to a café or something whilst they waited for the results.

When they got back he was in a state of panic. He was pacing up and down asking essentially, “where the hell they’d been?!” 

At 38 weeks pregnant I was at home babysitting my nephew so I wasn’t privy to these events as they unfolded. 

Her bloods were not normal. Her potassium was 7.2 when the normal level was 3.5-4.5. Not only that but she was in a severe state of acidosis caused by kidney failure. The reason he was going nuts was that he’d never actually witnessed that level of metabolic derangement in a living being. He said in another 3 hours she would likely be dead. 

My sister has had lupus since 2010 but you’d never guess from her spirits. She is so positive and spritely all the time. Even on this day you wouldn’t have known the pain she was going through. 

In the end, she spent about 3 weeks in hospital when she was meant to be on holiday. Some of these days were in the intensive care unit and the resultant total bill which my parents have been paying ever since was about £12,000 ($20,000). 

My sister’s kidneys are affected by lupus and she now lives with the support of kidney dialysis twice a week (reduced from 3 times a week). 

So tomorrow, 2-Jan-2015, I am shaving my head to raise money into research to find a cure for lupus.

Every little counts, so please give whatever you can. No amount is too small.

What is lupus?

Lupus is an autoimmune condition in which something goes wrong with the immune system and healthy cells and in many cases vital organs are attacked by one’s own body.

Who gets Lupus?

According to lupus.org:

• 1.5 million Americans, and at least five million people worldwide, have a form of lupus
• 90% of people diagnosed with lupus are women, aged 15-44.
• Lupus is 2 – 3 times more prevalent among black people, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders – than among Caucasian women.  
• Systemic lupus accounts for c. 70% of all cases of lupus. 

o    In c.50% of these cases, a major organ, e.g. the heart, lungs, kidneys or brain, will be affected.  

o    Cutaneous lupus (affecting only the skin) accounts for c.10% of all lupus cases.  

o    Drug-induced lupus accounts for c. 10% of all lupus cases and is caused by high doses of certain medications.  The symptoms of drug-induced lupus are similar to systemic lupus; however, symptoms usually subside when the medications are discontinued.

• 20% of people with lupus will have a parent or sibling who already has lupus or may develop lupus.
• c. 5% of the children born to individuals with lupus will develop the illness.
• 10-15% of people with lupus will die prematurely due to complications of lupus

My sister has systemic lupus and one year ago nearly died due to the complication of kidney failure. She survives day to day with the help of dialysis twice a week and I am hoping and praying that a cure is found soon so that one day she might be able to live a normal life again for her and her son.

Every little counts, so please give whatever you can. No amount is too small.